Hello friends, family and community following along I haven't met yet! It's been a long while since I've written a post.
There are a few reasons I haven't been writing, one of which was because I was in a dark and twisty place after I kept getting bad news after bad news, and the other was because of object permanence. If you're not familiar with ADHD, object permanence in the ADHD world is when you (the general you) don't see something or someone regularly, so it or they cease to exist in your everyday life, even though you know they actually do exist.
I knew this blog existed, and would remember it occasionally, and would think to myself, hmm, I should write a post, and then promptly forget said thought. Now that I'm out of my funk and feeling better, well, let's get back to business, eh?
I'm currently sitting in my absolute favorite coffee shop in Madison, WI (see button below)
sipping on a cold brew coffee and writing about what's been going on since December. Hopefully my brain remembers the last 6 months. I jest. I do, it's just been....a rollercoaster and perhaps we'll cover it in a few blog entries rather than just one.
First and foremost, I've been on Facebook less and less lately, mostly just to post pics of the kiddos to friends and family (because my Facebook is locked down whereas my IG and TT are not). T-Rex has asked for his digital footprint to be reduced so any public photos are either far away or of his face obscured. The same with Little A. I'll have to change this blog's cover photo for that same reason but I haven't found a suitable photo to change it to.
I want to thank everyone who have supported us over the last year and a half in every single way. Last year we paid off all of the debt we had with the fundraiser funds, and were able to put the remainder away for some of this year's debt (which is now gone because medical bills are ridiculous). I want to especially thank Shanda, Cindy, and Julie from my friend group for always being there and for organizing everything. I don't think they know how much I love and appreciate them.
Obviously, Mike's family and extended family has been more than phenomenal and honestly I don't know what we would do without them, even if I weren't battling stage iv cancer. From the moment I met this wonderful human (Mike) they have loved and accepted me into their family and there is no amount of words to express how much that means to me.
OKAY! Yes there are more thank you's and yes they're mushy, but I'll save them for another blog post. I have about a million (gross exaggeration) people to thank, but the overall gist is I have the best community on the internet, in my own personal opinion.
NOW- What you're really here for is an update since December. The MRI showed that I had METS to my lungs, uterus and the left lobe of my liver which meant that surgery was absolutely off the table. I continued on maintenance chemo for all of January and we tracked my CEA numbers (basically tumor markers in the blood) which have gone up or down in relation with my scans.
"The normal range for CEA is 0 to 2.5 nanograms per milliliter of blood (ng/mL). If CEA levels remain elevated during treatment, the treatment may not have been as successful as hoped. Anything greater than 10 ng/mL suggests extensive disease, and levels greater than 20 ng/mL suggest the cancer may be spreading."
We know that heading into February (and on my first day of treatment with Folfiri) my CEA markers were above 17, indicating that the maintenance chemo was not working. The next time we tested my CEA markers (we test every two rounds of chemo), they had dropped to 16.4, the time after that 11.6, and this last treatment, 7.1.
Along with a CT scan last month, we can see that THIS SECOND LINE OF CHEMO IS WORKING AND THE CANCER IS SHRINKING! We're calling it tangible hope right now. We're not getting our hopes up only to be crushed, but we have tangible hope and right now that's what we all need. We're happy, and thriving.
T-Rex is ecstatic and doing really well given then news. Mike is doing so much better as the weeks progress and those CEA numbers continue to go down, and my mom is so, so, so very thankful and happy. Then there's me. I can get out of bed. I am being a better mom. I am trying to be a better friend and wife. One day at a time. Everything is still exhausting. By 4:00 I still want to go to bed, but each day I feel stronger, like I can walk further, stand up longer.
Each day is a gift I plan on living. I plan on crushing this cancer, all with the support of you. Thank you all, so very much.
Please excuse any typos, I'm six months out of blogging practice ;)
xoxo
Browen